Welcome to the Colorado and Wyoming Newborn Screening Hospital Survey

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1 Welcome to the Colorado and Wyoming Newborn Screening Hospital Survey Thank you for participating in our brief newborn screening survey. The goal of this survey is to help our newborn screening programs in Colorado and Wyoming better understand the hospitals' newborn screening processes so that together we can improve the timeliness of newborn screening. Newborn screening began 0 years ago with screening babies for PKU in order to diagnose and treat PKU early, avoiding significant cognitive impairment in affected children. Over the years, the "PKU test" has evolved to include multiple disorders, thereby changing the name to the "newborn screen." Currently, both Colorado Department of Public Health and Environment (CDPHE) and Wyoming Department of Health (WDH) mandate that babies are screened for over 30 disorders. In February, new federal guidelines were approved that now recommend that newborn screening blood spots are collected no later than 48 hours and the blood spots are received by the newborn screening lab within 24 hours of collection. In order for both Colorado and Wyoming to meet these new federal guidelines, we will be working with all birth facilities across our states to improve the newborn screening process from collection of the blood spots to completion and reporting of results. Your feedback is very important to us. Together, we can ensure that the babies of Colorado and Wyoming are healthy and safe. Thank you for your time. 1. What is the hospital that you represent/work for? 2. What is your job role? Laboratory Manager/Director Nurse Manager Nursery Director Hospital Administrator 3. Who is responsible for collecting newborn screening blood spots at your hospital? Nursery/NICU nurses Lab staff Both nurses and lab staff

2 4. Who is responsible for filling out the information on the newborn screening blood spot card? Nursery/NICU nurses Lab staff Both nurses and lab staff Administrative staff. On average, how long do the following newborn screening blood spot processes take at your facility? <1 hr 1 4 hours 4 8 hrs 8 12 hrs hrs 24 hours hours >48 hours Drying duration from collection to packaging Packaging to courier pickup or other method of transport. Does your hospital utilize a reference lab (such as Quest Diagnostics or LabCorp) for collecting, handling, or processing of newborn screening blood spots? If yes, please explain the role of the reference lab in your newborn screening process. 7. Does your hospital's outpatient laboratory routinely collect second newborn screening blood spots (following discharge)? If no, where are patients referred for collection of second newborn screening blood spots (PCP's office, reference lab, other)?

3 8. What is your hospital's delivery mode of newborn screening blood spots to the CDPHE newborn screening lab (check all that apply)? CDPHE courier (Kangaroo) or WDH courier (Medical Logistics) Hospital courier Fed Ex overnight US mail 9. If utilizing another delivery mode other than CDPHE or WDH courier, please specify why (check all that apply). Did not know CDPHE/WDH courier was available Alternative mode of delivery is faster Alternative mode of delivery is adequate Alterantive mode of delivery is easier 10. If Saturday or Sunday courier pick up were available free of charge, what challenges would your hospital face in utilizing it? anticipated challenges, weekend courier pick ups would be challenging due to (please comment): 11. Optimally, CDPHE and WDH Newborn Screening Programs recommend newborn screening blood spots be received within 24 hours of collection at the Newborn Screening Laboratory. Do you have tools and resources to meet this goal?

4 12. What additional tools and resources are needed to reach the goal that newborn screening blood spots are received within 24 hours of collection at the Newborn Screening Laboratory? Training Best practice reference guide Alternative courier service 13. Identify potential barriers that limit your hospital from reaching the goal that newborn screening blood spots are received within 24 hours of collection. barriers identified Barriers include (please comment): 14. CDPHE and WDH Newborn Screening Programs issue quarterly reports to each hospital to report the hospital's performance regarding unsatisfactory specimens, missing demographics, timing of collection, and transit time. Do you or your hospital staff use these quarterly reports for quality improvement?, the report is shared with lab and/or nursing staff., I am aware of the report but I've never used it for quality improvement., but the data is difficult to interpret., I did not know quarterly performance reports were provided. Comments:

5 1. CDPHE recently provided educational newborn screening posters and DVDs to all Colorado birthing hospitals. Is your hospital currently using these educational tools?, the newborn screening posters and DVD are used by our hospital., my hospital received the newborn screening posters and DVD but is not currently utlizing them., I am not aware of newborn screening posters or DVD provided by CDPHE., I work at a Wyoming hospital but our hospital is interested in receiving posters and DVD., I work at a Wyoming hospital and our hospital is not interested in receiving posters and DVD. Comments: 1. Please provide contact information for further correspondence with CDPHE and WDH Newborn Screening Programs: Name Hospital Mailing Address Mailing Address 2 City / Town State / Province ZIP / Postal Code Phone Fax 17. What is your preferred method to receive written communication regarding changes and updates from the CDPHE and WDH Newborn Screening Programs? Fax Mail 18. Please provide any additional comments regarding newborn screening:

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